First-hand reports of “brain fog” highlight struggles of those living with Long Covid

Also known as Long Covid, experiences with this new condition are varied, and several symptoms are neuropsychological in nature.

One such symptom is brain fog. Though not a medical diagnosis in itself, this term is recognised by many health professionals, and refers to a fluctuating and varied set of symptoms which severely affect the sufferer's ability to think clearly, or conduct their lives as they previously have.

Brain fog is often thought of as a benign, non-specific symptom, and in some circles is even dismissed as malingering. But in fact, it's a symptom widely associated with chemotherapy, an issue for 40% of those with HIV, and source of frustration for many during pregnancy, amongst other medical conditions. Several neurological mechanisms have been proposed, but as of yet scientists don't agree on the exact physical cause. As such, research looking into this after-effect of Covid is likely to garner a wide array of responses.

At this stage, understanding the experience of brain fog in long Covid is important — in order to tackle a new condition, researchers must first obtain a thorough description of the problem. This is the starting point from which further research can truly begin. To this end, researchers based at Oxford University recruited 50 participants from previous long Covid studies and online long Covid support groups to participate in remotely-held focus groups.

Their pre-print details qualitative data gathered over the course of these focus groups, held in October and November 2020, during which participants discussed both their own symptoms, and commented on others' experiences with brain fog following Covid.

Members of the focus group often described neurocognitive symptoms consistent with deficits in executive function, attention, memory, and language, amongst other domains. With such a wide range of cognitive capacities affected, participants consistently described day-to-day functioning as severely impacted. One participant noted that shopping in supermarkets had become surprisingly difficult, due in part to what they described as sensory overload. "It's planning, it's getting there, it's choosing stuff. All of that is actually really difficult."

Another participant (a doctor) reported that they now struggled to deal with multitasking, feeling unable to cope with "multiple inputs". In professions that demand such a high level of metaphorical plate-spinning, brain fog is likely to have a profound impact not only on productivity, but employment stability, and even the experiences of those they work with. Those in the sample who had been able to return to work spoke of adapting their roles, reducing hours, or relying on someone to check their work for errors. This gave rise to feelings of anxiety and self-doubt, as well of a loss of self-worth and altered identity.

Participants reported feelings of extreme fatigue; physical or mental effort typically triggered a decline in neurocognitive symptoms, which one participant reported having to manage via a "traffic light" system. "Green's fine, [my partner] can just talk business at me. Amber is […] 'what's the weather like' kind of conversation, and then red is just 'stop, I need to just rest. Stop all the sensory input coming in'."

Further non-cognitive symptoms, such as tachycardia and breathlessness, were highlighted by a large portion of the sample as occurring in tandem with brain fog, or in response to cognitive effort. Several participants also highlighted trouble with interpersonal relationships which had arisen from these widespread cognitive difficulties.

This unfortunately also translates to extensive difficulties obtaining appropriate support from the healthcare system. Similar to other hidden or fluctuating disabilities, dismissive attitudes from physicians prompted feelings of frustration, anger, and hopelessness for participants.

While some participants experienced validation and relief after speaking with medical professionals, many felt that their symptoms were dismissed as "all in [their] head", and often found themselves with little continuity of care, speaking to a different person every time they went to get help.

They also noted struggling to effectively communicate their experiences through brain fog symptoms during medical appointments, repeatedly having to attempt to rapidly re-explain extensive cognitive issues within the given 10-minute consultation window.

The majority of participants reported that their brain fog symptoms became evident about one to four months after their bout of Covid. Encouragingly, most of the sample also reported that their symptoms were improving during follow up interviews four to six months after the first. However, this was not the case for the whole sample. It's worth noting here that our understanding of long Covid is relatively immature, and that cases of brain fog triggered by other conditions can persist for years on end.

Though the group noted that the term "brain fog" is often useful as shorthand, and recognised by many medical professionals, they were mixed in their endorsement of it as an appropriate term. Many felt that it lacks specificity, or doesn't fully convey the severity of the symptoms they experience. One participant stated that even those who understand what brain fog refers to mostly fail to comprehend the extreme amount of difficulty it introduces into everyday functioning. "[There] just doesn't seem to be the understanding there. And I can understand that, because it would be beyond my comprehension as well if I hadn't lived it."

This paper sets out a clear argument for the development of specialist services comprising interdisciplinary medical professionals, including physicians, clinical psychologists, and occupational therapists. These services must be easily navigable and accessible in ways that traditional primary care currently fails to be for patients with brain fog. It also shows that there is a stark and urgent need for focused training for primary care physicians on the functional, professional, and social impacts of cognitive dysfunction following Covid.  

Further reading

– "I can't cope with multiple inputs": Qualitative study of the lived experience of 'brain fog' after Covid-19 [this paper is a preprint meaning that it has not yet been subjected to peer review and the final published version may differ from the version this report was based on]

About the author

Emma L. Barratt (@E_Barratt) is a staff writer at BPS Research Digest